I have been reading about headaches from Moyamoya, and have been wondering if they are the cause of inconsolable crying periods that my sixteen-month-old daughter, Daphne, has had on many evenings in the past few months.

I thought, at first, that she was having some return of colick.  But now that I know what I know, I wonder if it is migrain related -- during these periods Daphne requires constant rocking, but no other stimulation.   The slightest sound, or brush of a blanket will set her off.  The lights must be kept very dim.

Anyway, I was wondering what has worked to alleviate the headaches, as Motrin often doesn't seem to help Daphne.  (BTW Daphne has been dx with severe Moyamoya but has not had surgery -- that is till in the works)

Thanks!
Jenny

Hello there! I am sorry to hear of your small daughter having MM. :( But you are so fortunate that she has had a diaginose. Anyway, I care for my sister who has severe MM. She is not treatable,,, due to being Downs,, age 54, with other problems. But my brother was just told he has it also. So he and I were comparing things. My sister is VERY sensitive to the light. She keeps her eyes covered if she would go out,,, even on a cloudy day.  My home is kept dark all the time.  Mostly the outside light hurts her the most. As for the headaches,,,, sound just kind of stays inside their head and just bounces around.  She has gotten worse with noise, except for the tv,,, doesn't seem to bother her or my brother.  As for pain,,,, you MUST get something from your doctor. She is currently on Morphine,,,, but she is also a hospice patient at this time. Keep us posted on what is going on,,, she is so young!!!   But,,, thankfully, you have caught it in time to avoid and more damage,  God Bless you and your little one. You will be in my prayers. Sincerely MJS

Hi Jenny:
My daughter was diagnosed at age 10 but had moyamoya from birth. She  had two strokes at age 9 and 10 months but they missed the moyamoya until 10 years later. We are very lucky she made it, her moyamoya is also severe. She too would cry for long periods of time when she was younger and was light and sound sensitive. The doctors told me there was no way a baby could have migraines but once again they were wrong. That was exactly what she was having. She was prescribed celebrex for her migraines and it helped but she can't take it any longer. She now takes advil gel caps for migraines but that is probably too strong for your daughter. Check with your doctor to see if there is something stronger for your little girl. What doctor is Daphne seeing for the moyamoya?
Tricia

Tricia --

Actually, we haven't decided yet which surgeon we are going with.   We contacted Dr. Steinberg at Stanford and Dr. Scott at Boston Children's when we found out Daphne had Moyamoya (that was about two weeks ago, after Daphne suffered two strokes in the same week.   Daphne's had a seizure disorder since she was three months old, but they only did structural MRIs and never saw the Moyamoya)

Daphne is all scheduled at Stanford, but Dr. Scott contacted us yesterday and has recommended surgery, too.   Boston is closer, but with Stanford things are all lined up for surgery in early March -- and we don't have any idea of when surgery would take place at Boston as of now.

That is so amazing that your daughter survived so long with severe Moyamoya after having had two strokes!   I have been worried about waiting a few weeks for surgery, after finding out about the MM.   How is your daughter doing now?   Has she had surgery?

Thanks so much for your post.   I feel more convinced than ever that Daphne is suffering from migrains  --- her doctors have kept telling me that she's having reflux, but then again they thought Daphne's first seizures were reflux-related, and I always knew better than that!

Jenny

Amanda had EDAS surgery in July and August 2000 at the Hospital for Sick Children in Toronto, Ontario, Canada. Her headaches improved after her surgeries, they aren't as severe when she gets them now. She has done very well considering everything she has been through. We have an appointment to go back and see the surgeon on April 11, because they found a new spot on her brain stem with the last MRI. I'm not sure where this will take us this time but she has proven that she is an extremely strong girl and I'm sure whatever comes her way she'll continue to keep beating it. As will your daughter. Kids are such amazing human beings.

Kotipup,
              My daughter was mis diagnosed with seizures a year before she had 4 major strokes and was diagnosed with MM, so chances are the seizures have been from the MM. Every case is different and I'm not saying it is definate everyone is totally different alot of times. But there is a chance after her surgery that problem maybe solved.........although people have seizures after surgery also, even years later. I know it sounds contratictury (sp) but hey thats the beauty of this great disease [smiley=huh.gif] is so complicated. I hope I didn't confuse or scare you more. Mandy didn't have any seizures until 2 years later and has had only one, some don't have any.  [smiley=confused2.gif] Good Luck with everything, your going to the right place thats where Mandy had her surgery, Dr. Steinberg is the one who told us they weren't seizures she was having a year prior. He and his staff are tremedous. My thoughts and prayers are with your family.
         Nancy

Jenny, Kathleen is 7 she had her surgery with Dr. Scott 3 yrs ago.We realised after the surgery that she had stopped crying every morning when she woke up.I believe now that she was waking up with headaches.Now every so often she will cry rather uncontrolably and she won't even answer me asking her whats wrong.She seems to be kinda "out of it" when she does this and it sounds to me like a "hurt" cry.I think it may be her ehad hurting.I'm not sure which comes first she starts crying and this hurts ehr ehad or her head hurts and it makes her cry,could be a bit of both KWIM.She also has down syndrome so she isn't as verbal as a typical 7 yr old so this makes figuring things out a bit more difficult at times.
 Have you decided about surgery yet? You are in good hands with either surgeon.Dr. Scott and BCH were wonderful to us.They cared so much for our whole family.How has your daughter been doing? I will keep her in my prayers...
Mary Grace